Dystonia

Posted on by 9 comments

It might well sound like a breakaway Russian Republic but it isn’t. Dystonia is a neurological condition that effects people in many ways. The most serious form of the condition effects the entire body causing violent involuntary movement.

On this page you will find links to sites which deal in detail with Dystonia. My hope is that you will find the information useful and helpful if you do happen to have Dystonia. If you don’t have the condition but know someone who has, then I hope you will find the links informative and helpful.

Definition of Dystonia:

Dystonia is a neurologic movement disorder characterized by sustained muscle contractions, usually producing twisting and repetitive movements or abnormal postures or positions. Almost all dystonic movements share a directional quality that is typically sustained, sometimes for an instant, as well as a consistency and predictability Dystonia movements are directional, forcing the involved body part or region into an abnormal position, which is consistently present.

Generalized Dystonia


Click the forward button to play. If you want to go to see it on YouTube, with comments, etc, just double click on
the video itself.

What is Dystonia?

Living with Dystonia

Living with an illness such as Dystonia can heighten feelings of stress and depression in some people. There may be days when you feel angry about having Dystonia and the limitations (physical) it can cause in your life. You may dislikke taking medications on a daily basis. You may feel guilty about having Dystonia. You may worry about Dystonia and the genetic factor. You may fear needles and electromyography machines. You may evehn feel rejected for being different. There may be days when you feel lost, lonely or sad.

Should this be the case, try to remember that just about everyone with any illness (asthma, diabetes, heart disease) might at times have similar feeling. But you can choose the way you handle dystonia on a daily basis. A "take charge" attitude is a major step in dealing effectively with Dystonia.

Review the following signs of stress and depression. If you are feeling any of these symptoms on a continuous basis, please do speak to your doctor. It is important to recognise that the following signs may also be a direct result of your Dystonia (for examplle, headaches can occur with cervical Dystonia) or the medication used to treat Dystonia.

Common Signs of Stress/Depression

  • Trouble falling
    or staying asleep
  • Nervousness
  • Irritability
  • Difficulty concentrating
  • Change in appetite
  • Alcohol or drug abuse
  • Difficulty sleeping or sleeping too much
  • Fatigue and lethargy
  • Feelings of helplessness/hopelessness
  • Crying
  • Lack of social interests
  • Feelings of self-blame
    .

What to do when signs intensify:

  • Ask for help.
  • Get plenty of rest.
  • Talk about it with family and friends.
  • Don’t avoid your feelings .
  • Seek individual or group support.
  • Get involved in social activities.
  • Organise your time and activities.
  • Maintain good nutritional habits.
  • Inform your
    doctor and review your treatment strategy.
  • learn more about Dystonia.

Specific Effects of Different Injection Sites

Type of Dystonia Possible Possible Post-Injection

Temporary side-effects & Comments

Blepharospasm

(Involuntary Eye Closure)

  1. Eye irritation.
  2. Dry or wet eye.
  3. Double or blurred vision.
Hemifacial Dystonia
(Facial Spasms)
  1. Dry or wet eye.
  2. Facial Droop (lasting for just a few days).
Cervical Dystonia
(Spasmodic Torticollis)

  1. Neck weakness and stiffness.
  2. Swallowing difficulties.
  3. Head tremor
  4. Flu-like illness, fatigue and nausea
Spasmodic Dysphonia
(Spasms Affecting Vocal Cords) ·
  1. Breathlessness
  2. Difficulty swallowing, choking or wheezing.
  3. Hoarseness.
Oromandibular Dystonia
(Spasms affecting Face, Jaw, Tongue.)
  1. Swallowing difficulties.
  2. Nasal speech.
Occupational Dystonia
(Writers Cramp)
  1. Local limb weakness (which could be helped with physical therapy)

BOTULINUM TOXIN

The beneficial effects of Botulinum Toxin can provide significant improvement to the various forms of Dystonia — lasting approximately 12 weeks. Its side effects can last for a week or more, which may include mostly fatigue and bruising. More specific ones are commented on below. These possible side effects
typically resolve within a few weeks after injection. The presence of such side effects should be reported to your doctor for review, prior to subsequent treatments.

Specific Effects of Different Injection Sites

The purpose of Botulinum toxin treatments is to weaken muscles. The side effects are usually due to the muscle weakening or other properties of the toxin. Side effects that are temporary may be a clue to consider changing the treatment strategy in the future.

DEMYSTIFYING DYSTONIA. Written by Rebecca Serdans, R.N. B.S.N.
C.D.E. and Mitchell F. Brin M.D.
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9 comments on “Dystonia

  1. Thank You for your courage Paddy. I also have dystonia myself so, I know that it’s probably not easy to make a video showing your symptoms. I can’t bring myself to do it. But I want to and your courage helps people like me want to do it even more. Again thank you!!
    God Bless you,
    J.W.

  2. Great Site Paddy..

    Link to your 48 film just placed up…

    Expect an email from me privately via my other private email address..

    beka RN MS ANP CDE

  3. I too have Generalised Dystonia DYT1 – it is indeed a most difficult condition to cope with. It absolutely outrageous that you should have to wait so long for an electric/powered wheelchair. If there was anything I could do to help other than just post this comment, then I’d be happy to do it.
    I wish you well. Paddy.

  4. i have generalised dystonia/parkinsons. it is a dreadful condition. I am on a waiting list for an electric wheelchair and told it could be up to 18months, so is my twin with a dx of parkinsons.

  5. Thanks for making this , Paddy . It was hard , but important , to watch . Yes , it does have significance , in many ways , not least the way your dog gives you unconditional love at the end . You are a fighter on many levels and that’s always a blessing and a curse . It kills us in the end but makes a life that’s worth living .You’re not a saint or a superman , despite your celebrity , so no doubt like everyone else who bucks the system and wants justice and their truth to be heard , you tread a physically and emotionally hard road . I hope I have heard and seen some of your story correctly although we never completely get another’s message and I send you love , prayers and positive thoughts today , hoping you will never give up , no matter how hard it gets or how many establishment bastards you have to contend with .

  6. Ann is right very powerfull .to thoes who dont take notice should be ashamed of them selfs there ignorance will be there downfall.
    much respect to you paddy

  7. Ann is right very powerfull .to thoes who dont take notice should be ashamed of them selfs there ignorance will be there downfall.

    much respect to you paddy xx

  8. Thank you Anna. For others who may be interested in the video Anna refers to, it can be found by clicking this link http://www.paddydoyle.com/dystonia/ Thanks. Paddy.

  9. Powerful video, hope the powers that be sit up and take notice.

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